Georgetown family seeks support for rare disease
A Georgetown family is hosting their third annual fundraiser to raise awareness for Cystinosis.
It’s a genetic genetic disease their 10-year-old son Chandler was diagnosed with when he was 10 months old.
“He does have a disease but I don’t want it to stop him. He’s still going to be a normal kid like anybody else.” Says his mother Annie Moore.
Chandler’s father, Clinton Moore, says this mostly affects his kidneys and eyes.
“Chandler’s blood cells lack a transporter to take the amino acid called cystine out of the cells, so the cystine accumulates…crystallizes and then attacks every organ in his body.” Says Clinton.
On an average day, Chandler needs to apply eye-drops every hour he’s awake. He also takes about a dozen oral medications to treat the many side effects, like achy bones. It adds up to 68 pills every day.
For the shy and charming Georgetown boy, that means having restricted playing time for one of his favorite school activities: football.
“I don’t really play. I’m just a water boy for the team.” Says Chandler.
The disease is rare, with only 2,000 people diagnosed worldwide. It’s a big reason why Clinton takes an active role in the Cystinosis Research Network as a board member.
Funds from the Moore’s annual fundraiser named “Chandler’s Chance” will go directly towards to the non-profit. In years past, it has drawn up to 200 people. Their goal this year is 300.
“We have fire truck rides, hay rides, all of the hot chocolate and cookies you could want…Santa Claus will be here, face painting, there will be upwards of 90,000 Christmas lights in between the two houses…” Explains Clinton.
The hope is to make more people, more aware of this disease so that patients like Chandler can hopefully add activities like football to their list of hobbies. For him, that list already includes reading and writing.
Back in September, Chandler wrote a poem expressing his feelings on the disease.
“He wrote ‘…having Cystinosis is hard. It involves a lot of pills and a lot of surgeries. Eventually, you will have to have a kidney transplant and you have crystals in your eyes and you have to take eye drops to help and yes this stuff does get annoying but I don’t care….as long as I am still here. I will keep doing it..” read Clinton.
This year, the fundraiser will be held on December 5th. It will be held at the Moore’s home in Georgetown. There’s no entry fee, but they are asking people to donate what they can.
Anyone who would like more information is asked to contact Clinton Moore at 302-841-7603 or clintonmoore1@aol.com.
